“Little Red” Benefit

Caley Barber needs support to fight her battle against Lyme Disease.  She doesn’t remember being bitten by a tic, but about 6 years ago, strange symptoms began:  flu-like symptoms, shaking, stiffness, poor balance, slurred speech.  She sought medical help, and since has been seen by 5 neurologists, 2 movement disorder specialists, a rheumatologist and one communicable disease specialist.  She has had many blood tests and others to rule out MS, and other neurological disorders.  She has had three MRI’s and a spinal tap.  Doctors advised that left only one possibility:  early onset Parkinson’s disease, an extremely rare condition which affects Michael J Fox.  Her treatment with dopamine was not effective, so doctors increased the dosage, leaving Caley debilitated with terrible side effects.  As many people know, she was let go from her job as manager of Christien’s Restaurant due to concerns she could fall and cause injury to herself or others.  Feisty, spirited, fiercely independent, Caley now relies on help from family and friends, and disability.  Her future is uncertain, her home and its ownership always at risk.

Caley did not show a positive result on Ontario’s test-kit for Lyme because it only tests for one strain of the virus.  Health Canada knows the test-kit is inadequate, so that forces Canadians to seek out a more appropriate test.  Caley spent over $600 US to get the Western Blot test, and result was positive.  A government grant was used to pay for the $9800 US to rule out Parkinson's.  However none of Caley’s doctors want to discuss Lyme, or consider treating her for Lyme.  Her only option is to seek out Dr. Maureen McShane in Plattsburg NY.  And get this:  635 of Dr. McShane’s 750 patients come from Canada.

Turns out the best treatment for Lyme includes long term antibiotics.  Caley’s treatment so far has consisted of super expensive drugs, vitamins, supplements and more and more diagnostics.  These have cost Caley AND the tax payer far more than those good, old, effective antibiotics would have.  Why does our government want to continue to waste money on ineffective tests and treatment?  According to Jim Wilson, a former Lyme disease sufferer and founder of The Canadian Lyme Disease Foundation (CLDF), Canadian hospitals still follow American guidelines from 2006 on how to treat Lyme disease.  The charitable organization wants to change the government’s perception that it ought to follow American guidelines.  The US have since enacted legislation allowing these doctors to step out of the grip of the college who impose “these terrible guidelines,” said Wilson, adding that Canadian doctors who ignore them face being shut down by their provincial colleges of physicians.

The old guidelines restrict antibiotic treatment to 28 days, which new research has found doesn’t work with disseminated or chronic Lyme disease.

So Health Canada knows, and Jim Wilson knows too.  Toby Barrett, MPP for Haldimand Norfolk, has also introduced Bill 27:  Provincial Framework and Action Plan Concerning Vector-Borne and Zoonotic Diseases Act, 2014 in the provincial legislature, which will be debated on November 20th.  This is all great news, but Caley needs help now.

Caley needs $40,000 to cover the cost of her medical visits, meds, and keep her home.